When you’re getting ready to go on a flight, what’s on your last-minute to-do list? Mine looks a little something like this:

Make sure I packed enough underwear

Charge my Kindle

Start limiting the amount of liquid I drink

Does that last one seem a little strange to you? Well, for wheelchair users who are unable to get up and walk (like yours truly), limiting what we drink before flight is often the norm, because there’s simply no way for us to access the restrooms aboard a plane.

But bathrooms are something most people take for granted, and so they drink to their hearts’ content before and during a fight. Most people simply can’t imagine not having access to a place to relieve themselves wherever they go. And for that reason, I’m not all that surprised by a report that a Delta flight from New York City to Seattle had to go hundreds of miles out of its way to make an emergency pit stop just because the plane’s toilets were broken and people had to go right now.

Let me tell you something: I just took a flight from New York City to Seattle a few months ago. Heck, I’ve flown from New York City to Israel. And you know what I had to do on those flights, and every other flight I’ve ever been on? Hold it. I’ve gone without peeing for upwards of 14 hours so I could travel.

On the flights where I’ve found myself needing to use the restroom in spite of my valiant efforts to avoid drinking anything, the only solution was to meditate and deal with it. Seriously. No way would a pilot divert a flight because I needed to “find relief of built-up pressures.”

Once, during a flight home from Minneapolis, I had the misfortune of experiencing motion sickness. Fair warning: what I’m about to say may not be fun to read if you’re easily made to feel queasy.

I asked the flight attendant for a motion sickness bag, but she didn’t take my request seriously and took her sweet time getting it. Since I couldn’t get up to go to the restroom, I got sick all over myself. And then, you know what happened? My dignity took a nosedive and I had to change out of my vomit covered clothes in the middle of the airplane while the flight attendant who didn’t get me the paper bag in time held up a blanket to try to give me a modicum of privacy.

Why am I telling you all this? To highlight what it’s like to be disabled in a world designed by people who don’t take you into account.

I spend my life (not an exaggeration) strategizing every move, big or small. From researching if I’ll be able to get into the new restaurant a friend suggests for dinner, to deciding if I should stay on a long sidewalk in the hopes there’s a curb cut at the other end, to figuring out when I’ll next be near a restroom I can actually use­­––everything requires planning.

Of course, it’s possible that people on the Delta flight had other types of disabilities, chronic conditions, or age-related bladder or bowel issues, so yes, I get why the plane landed, but the world sure doesn’t accommodate me with emergency landings.

But there are laws to make things accessible, you might say. True. The Americans with Disabilities Act was passed over 27 years ago to prohibit discrimination and provide access for disabled people in all areas of public life, but even with amendments to update the law, inaccessibility is still everywhere. The Air Carrier Access Act (which significantly fewer people know exists, including, seemingly, airline personnel) was passed nearly 32 years ago, with the intent of ensuring the disability community has access to air travel. Yet, though it’s since been amended, the law still allows for aircraft with only one aisle to have inaccessible restrooms. These types of planes, known as narrow-body planes, are used by commercial airlines pretty darn frequently.

Even so, I need to travel for work. I have to go places in order to go about my day. I have the right to be an active member of my community.

I could wrap up with a broad, sweeping call to action to improve upon accessibility everywhere, from storefronts to airplanes, but I believe this kind of change won’t happen without recognition of just how easy it is to take access for granted.

I admit that I roll my eyes when people who break their leg or have surgery that temporarily impacts their mobility tell me they “get” what I “go through” every day, but there’s still a lesson to be learned from these comments: the ability to access wherever you please doesn’t matter to people, until one day it does. Anyone can become disabled at any time.

That may sound intimidating, but think about it: if you became disabled tomorrow, wouldn’t you want to live in a world where you had access to basic things like restrooms anywhere you go? People don’t think about the possibility of not being able to use the restroom until access to this basic need is taken away from them, just like the situation on the Delta flight.

It shouldn’t have to be this way. Full bladders should not inhibit full participation in society for the disability community.

I have a little tradition to search for handmade jewelry when I travel, usually rings or earrings. It’s my favorite way to bring home a piece of where I’ve been. Since I just visited New Mexico for the first time to join my family in celebrating my cousin’s wedding, I was especially excited to see what I’d find because I love southwestern jewelry designs. My mom (who also uses a wheelchair), my dad, and I ventured to Old Town in Albuquerque one afternoon to look around and when we reached the first shop, Native Gallery, I was immediately drawn to rows of earrings and beautiful pottery.

Not even 10 seconds after entering the shop, I gravitated toward some rainbow bowls in the front of the store and was already contemplating buying one when the shopkeeper came over to my family and said “there’s no room for you here.”

Mind you, the aisles were a bit narrow but I have the depth perception to know my wheelchair would fit through and the common sense not to drive like a wild woman through a store full of valuable breakables. There was undeniably room for us. So, I began to explain that we were fine and would be very careful, but the shopkeeper again insisted there was “no room” for us and demanded we leave.

My dad, who was standing up and is obviously taller than me, could plainly see the shopkeeper was lying about the lack of space. In fact, aside from the one couple he was ringing up, there wasn’t a single other customer in the store. There was plenty of room. Based on the look of horror on the shopkeeper’s face when he saw two wheelchair users roll through the entrance, the urgency with which he jumped up to ask us to leave, and his persistent arguing that we couldn’t stay, it was clear he just didn’t want us to patronize his shop, or assumed we’d cause damage, and so he thought it best to kick us out rather than finding a way to accommodate us.

I sort of get it, maybe. Power wheelchairs in a store full of fragile pottery are risky and the shopkeeper wanted to protect his goods, but the reality is that anyone could accidentally break something. At the very least, he could’ve offered to bring some pieces to the front for us. But no matter how many times we pointed out that turning disabled people away from your public business is discriminatory and illegal, the shopkeeper ultimately forced us away.

I just wanted to buy a ring. I wanted a taste of what New Mexico has to offer. I wanted to enjoy the late afternoon sun and the colorful boutiques with my parents. I love exploring new places. Yet it seems every time I try to embrace my independence like any other human being, someone stops me in my tracks and reminds me that disabled people are still not fully welcome in this world we inhabit.

In most cases, it’s structural barriers that prove unwelcoming. Steps and narrow entryways are warning signs to stay away. Because of this, I’m generally inclined to give my business to places where the architecture isn’t keeping me out. Of course, there are plenty of instances where I take one look at a place and can tell there’s no way I will actually be able to navigate safely or easily. But I have learned to make my way around in environments not designed with accessibility in mind. I have learned how to weave through curves and make sharp turns, how to roll forward at just the right angle and slip through tight spaces. Within the realms of accessibility, where I go is my decision to make.

And so, even as the sting of this encounter flowed through me, I was still determined to find a ring. We went to a shop around the block called de Colores Galleria. There, the owner was lovely, accommodating my mom and I as we narrowed down our jewelry options, never making us feel as though we were unwelcome or in the way.

While she helped us, my mom shared with the woman behind the jewelry counter what had happened at the other shop. The woman was mortified, apologizing on behalf of Old Town. “I’m so sorry,” she said. “That’s not good for Old Town. And that’s not good for you.” We appreciated that, and thanked her profusely for her hospitality before we left.

My mom and I felt compelled to thank the second shopkeeper because her kindness was such a refreshing change from our first encounter. That said, we were essentially thanking this woman for treating us like people. It’s a painful reality of my existence that I find myself expressing gratitude when people communicate with me in such a way that shows they see me as deserving of equality and respect.

As I sat down to recount this shopping debacle in writing, my stomach tightened at the thought that issues such as this – the ones I so desperately wish to see eliminated – are the ones on which I’ve built a platform and a career. The frequency with which I experience and write about ableism has become a twisted form of job security, because deep down I know I will never run out of stories to share. And yet, what I would give for an end to the writing fodder, as it would mean a world finally without encountering discrimination.

I am tired of the days when simple moments of enjoying life are shattered by someone else’s lack of understanding and acceptance. I am a tireless activist, but I am still tired.

I kept the ring that I picked from the second shop on my finger as I wrote this. It now has a place as one of the most bittersweet pieces in my collection, but I treasure it. I will wear it with joy not only because it is a reminder to keep up the fight even when I feel defeated, but also because of the other memories it holds: eating raspberries straight from the bush in my family’s backyard, the hazy mountain view surrounding us, twirling around the dance floor with my dad at my cousin’s wedding, peering out of a tram with my family as it reached 10,378 feet, and – most beautiful of all – being with people I love, who love me, and who welcome and accept me as I am.

Did I say I bought one ring? Okay, I meant two rings. And two pairs of earrings…

I woke up last weekend with sharp pain in my left ear, realized my regular doctor’s office was closed, and decided to hop in my van to head over to a local walk-in clinic. I don’t find anything particularly out of the ordinary about the fact that I handled this situation, but the doctor I saw did. After a quick look in both ears, the doctor (who I’d never met before) began peppering me with nosy questions that were completely irrelevant to treating my newly diagnosed ear infection.

“How did you get here?”

“Oh, so you can put your wheelchair in your car by yourself?”

And my personal (least) favorite: “Who do you live with?”

None of these questions were necessary in determining I needed a prescription for antibiotics, and yet the doctor persisted. Her face and tone made it pretty obvious that she was doubtful of my independence and ability to pursue my own medical care, despite the fact that I was clearly by myself and already right in front of her. Then, as I got ready to leave the exam room, the doctor practically lunged at me to try to help me put my coat on and acted as though I’d offended her when I told her I could do it myself.

On the flip side of the skeptics I encounter, there are tons of people who find my independence inspiring. I recently went to a dentist appointment and just as I finished up at the check-out desk, the receptionist asked, “Is someone already here to pick you up?” When I said no, and that I’d driven myself there, she said “WOW! I can barely get myself out of the house in the morning. It’s amazing that you got yourself here.” And then, of course, she tried to help me put my coat on.

This happens to me everywhere. People constantly treat me as though my independence can’t possibly be real. Here’s another perfect example: I’ll be minding my own business, getting in or out of my van in the middle of a parking lot, and a person will come rushing over to ask if I need assistance. I sincerely wonder why the people who ask me this don’t stop to consider the very obvious fact that I clearly got in my vehicle and drove there on my own. Really – if I got to my destination in the first place, I can do the same in reverse. I have a handle on it. Promise!

Whether people are dubious or inspired, their comments, questions, and offers of help always stem from the same basic assumptions about disabled people – that we’re not entitled to any privacy regarding how we go about our daily lives, and that we’re incapable of autonomous actions. This drives me up the wall.

Seriously, wouldn’t it bug you if the things you did every day were constantly questioned, or if people fawned over you just for doing something as simple as going to the doctor or running an errand? Or if people frequently assumed you couldn’t figure things out on your own?

So, here’s my philosophy on independence, and this extends to people of all abilities, disabled or not: Regardless of how people do things – whether they had help eating their breakfast or did it on their own, or whether they got a ride or drove somewhere on their own – it’s not anyone’s business. I don’t applaud random people for getting out of bed in the morning, nor do I ask how they did it. I just accept that it happened, because that’s how life rolls.

P.S. Related to this topic…check out the 2nd episode of my new podcast that I’m making with my friend Kyle, The Accessible Stall. The episode focuses on assumptions people make about disabled people, independence, and whether they need help. And let me know your thoughts on the subject!